Has anyone tried to \"politely teach\" your allergist about FA?

Posted on: Mon, 01/02/2006 - 5:04am
lilpig99's picture
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Joined: 12/22/2005 - 09:00

Looking back on our first grapple with DD's FA's. I am really disappointed with the info or lack thereof that our allergist provided. We were NEVER given a list of hidden nut containing products, never told about 'may contains' or 'manuf. on's', never told about school situations.

As my DD's first RAST for nuts showed only a 1 for treenuts, we were even told we 'could avoid them (tree nuts) if we wanted to, but if dd ate them she would'nt have a serious reaction with those levels' !!!! HOLY COW and thank GOd we opted to leave nuts out of her diet...for about a year and a half later, she finally ate a teensy bit of cashew (given by me [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] )and had an ana. reaction. Upon re-doing the RAST , her cashew level had gone to 4+ and all other TN were 1 still. I think the may contains, manu. on's may have gotten to her in that year and a half. ANYHOW,

With all this poor info. I am seriously considering writing a mini-manifesto of sorts...letting them know about my experience with their office, how I basically have self-taught to keep DD safe. I am a little worried though...3 members of our family see her--I actually like the woman very much, but am very dissapointed in the lack of information they provided considering the serious nature of dd'd FA. Have any of you ever spoke with/educated YOUR allergist? Very curious to hear your story. (Of course, I realize I can always switch dr's...which I may, but what about those others under her care? )Hmmm.

Jill
kelsey 5, tna
mark 17 mo, ea, ma

Posted on: Mon, 01/02/2006 - 5:06am
lilpig99's picture
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Joined: 12/22/2005 - 09:00

YIKES! I meant for that smiley to be a frown one...A FROWN ONE!!!!!!
[img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img] [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img] [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img] [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img]

Posted on: Mon, 01/02/2006 - 6:06am
Carefulmom's picture
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Joined: 01/03/2002 - 09:00

I think if I felt that I had to be the one educating our allergist instead of the reverse, I would change. After all, picking a doctor is about how much they know. It is wonderful if in addition he/she is a nice person, but that really isn`t the most important thing. My dd has seen her allergist for 10 years and I never felt that way, but if I did I would change. I credit him with saving her life, as he gave me an epi when she was only allergic to milk. When she ate egg for the first time at age 2 1/2, I had to use the epi. I am so glad her impressed on me that even milk allergy could be life threatening. I don`t think in a situation like this (life threatening food allergies), I would want to be seeing a doctor who knows less than me.

Posted on: Mon, 01/02/2006 - 7:59am
Gwen 5's picture
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Joined: 01/24/2003 - 09:00

I have to say that I, like you have had to self teach EVERYTHING!
I think even the allergists themselves, since probably the majoprity of them do not suffer from FA don't realize the extent of what we must do to keep our children safe.
I have always been disappointed about how the Dr's know so little about our lives and how we must conduct them, once we discovered our children's allergies.
I think it is very unfortunate that we don't find any support in the medical field, or anywhere else- that is probably why so many of us live on PA.com-
we get support, guidance, understanding, empathy, help- I could go on and on.
I would say that i have gotten most of my information on this site.
At this point I rely on my allergist for RAST testing and my Epi pen prescription.
I think it is a bummer that we don't get the education or guidance we could use and I do feel for all the kids that get new diagnosis of FA's thius year, because it is a huge job keeping our children safe.
By the way I have an 8 yr old dd who is allergic to PA, all TN's, sesame and we avoid all seeds- she also has Asthma.
It is not easy, but she is a bright, well adjusted girl- we have been dealing with her FA since she was 4.

Posted on: Mon, 01/02/2006 - 8:58am
Peg541's picture
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Joined: 12/29/2002 - 09:00

I felt our allergist dropped the ball when he diagnosed my son 15 years ago but it sent me on a mission to educate us and I did. And like all of us here I am not going to sit around and wait for a doctor to tell me something. I am going to ask and then educate myself.
We just met with the UBER allergist at Chidren's Hospital and he was staggered by the amount of information my son had and how someone so sensitive could do so well. I was grateful, proud and flattered.
But there was so much more this guy told us that we never knew about food allergies. I wish I had three hours with him. I'm still trying to digest some of it.
We are in the trenches and we have SO MUCH MORE to lose than the allergists so we feel it deeply and it comes across that way.
I think our allergists know but our knowledge seems vast compared to theirs sometimes.
Peg
[This message has been edited by Peg541 (edited January 02, 2006).]

Posted on: Tue, 01/03/2006 - 3:28am
worrieddad's picture
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Joined: 12/28/2004 - 09:00

Our pediatrician reccommended our first allergist. This one was fairly incompetent as well. Told us our Daughter was NOT allergic to peanuts or tree nuts after a skin test. Our new allergist gave her a RAST (75 and 50). We heard other horror stories about the first doctor from other parents....no instruction about cross contamination, strict avoidance, and how to use the pen. After we found our second (very competant) doctor we complained about the first to our pediatrician. They dropped him from thier recommend list and now use the allergist we found. This person may be nice but a doctor can NOT be this incompetent. I would complain to them directly, any referal service etc....THIS IS an IMPORTANT ISSUE.
Good luck.

Posted on: Tue, 01/03/2006 - 6:08am
pgrubbs's picture
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Joined: 10/27/2003 - 09:00

I like our allergist. She has a child with FA. However, at ourt last appointment, she said "Oh, I didn't know there is a cross contamination risk with bread for peanuts."
Hmm.

Posted on: Tue, 01/03/2006 - 6:42am
lilpig99's picture
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Joined: 12/22/2005 - 09:00

Carefulmom and worrieddad, I understand that it is CRAZY that an allergist does not totally 'get it' in regards to FA. Are there really that many pediatric FA specialists around? I still think I'm going to let them know what I think...in the nicest way possible of course [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img].
Peg 541, I'm glad you love your UBER allergist (that's fun to say ) ..even though I don't know what that means [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]. It must be a really good feeling that a dr. would know all the latest info and such.
Gwen5, my dd also has asthma and I have been really quite pleased with how they aggressively treat her. No fooling around there...maybe that's why I'm hesitant to change drs.
I think that even when many dr's don't get it...it goes to show just how difficult and even uncertain it is in treating food allergies. But I don't get free medical help from dd's allergist..IOW, I pay for her service and I really should get competent care. ARGH!
jill

Posted on: Mon, 01/02/2006 - 5:06am
lilpig99's picture
Offline
Joined: 12/22/2005 - 09:00

YIKES! I meant for that smiley to be a frown one...A FROWN ONE!!!!!!
[img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img] [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img] [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img] [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img]

Posted on: Mon, 01/02/2006 - 6:06am
Carefulmom's picture
Offline
Joined: 01/03/2002 - 09:00

I think if I felt that I had to be the one educating our allergist instead of the reverse, I would change. After all, picking a doctor is about how much they know. It is wonderful if in addition he/she is a nice person, but that really isn`t the most important thing. My dd has seen her allergist for 10 years and I never felt that way, but if I did I would change. I credit him with saving her life, as he gave me an epi when she was only allergic to milk. When she ate egg for the first time at age 2 1/2, I had to use the epi. I am so glad her impressed on me that even milk allergy could be life threatening. I don`t think in a situation like this (life threatening food allergies), I would want to be seeing a doctor who knows less than me.

Posted on: Mon, 01/02/2006 - 7:59am
Gwen 5's picture
Offline
Joined: 01/24/2003 - 09:00

I have to say that I, like you have had to self teach EVERYTHING!
I think even the allergists themselves, since probably the majoprity of them do not suffer from FA don't realize the extent of what we must do to keep our children safe.
I have always been disappointed about how the Dr's know so little about our lives and how we must conduct them, once we discovered our children's allergies.
I think it is very unfortunate that we don't find any support in the medical field, or anywhere else- that is probably why so many of us live on PA.com-
we get support, guidance, understanding, empathy, help- I could go on and on.
I would say that i have gotten most of my information on this site.
At this point I rely on my allergist for RAST testing and my Epi pen prescription.
I think it is a bummer that we don't get the education or guidance we could use and I do feel for all the kids that get new diagnosis of FA's thius year, because it is a huge job keeping our children safe.
By the way I have an 8 yr old dd who is allergic to PA, all TN's, sesame and we avoid all seeds- she also has Asthma.
It is not easy, but she is a bright, well adjusted girl- we have been dealing with her FA since she was 4.

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